Sarah is hoping to raise £130,000 by next month to pay for her surgery and aftercare

Sarah also suffers from digestion problems and seizures due to her condition.

The money she raises will go towards life-saving surgery and her aftercare, which will require round the clock careers.

Sarah currently uses a catheter and lives with full time carer, Sue Geere, and care dog Otto

Otto helps her with tasks like opening and closing doors, picking things up and alerting her to oncoming seizures.

A RARE CONDITION THAT AFFECTS THE CONNECTIVE TISSUE

Ehlers-Danlos syndrome (EDS) is the name for a group of rare inherited conditions that affect connective tissue that provides support in skin, tendons, ligaments, blood vessels, internal organs and bones.

There are four different types of EDS, EDS-hypermobile, classical EDS, vascular EDS and kyphoscoliotic EDS. The latter three are rarer.

The different types of EDS are caused by faults in certain genes that make connective tissue weaker.

EDS can affect people in different ways. For some the condition is relatively mild, while for others their symptoms can be disabling.

Some of the rare severe types can be life-threatening.

Symptoms:

increased joint movement

stretchy skin

fragile skin that breaks or bruises easily

joint pain and clicking

fatigue

digestive problems

dizziness and increased heart rate after standing up

problems with organs

problems with bladder control

Treatment:

There’s no specific treatment for EDS, but with support and advice it’s possible to manage many of the symptoms.

Source: NHS Choices

She has lived in constant pain for the past 20 years but was only officially diagnosed with EDS six years ago.

“They [doctors] only really suggested that it was EDS when my condition worsened a lot and more and more well-known EDS cases were popping up in the media,” she said.

“The neurosurgeon said to me if I don’t have the surgery in November it’s unlikely I’ll make it to Christmas.

“He said that this is now a matter of urgency and that, to put it bluntly, without the surgery, I don’t have long left.”